Lissencephaly, Lennox-Gastaut Syndrome, and Autism: Joy & Grief Through Medical Parenting
Inside the Children's Hospital
Release Date: 12/04/2024
Tay-Sachs Disease: A Father’s Story of Diagnosis, Parenting, and Purpose
Inside the Children's Hospital
In this episode of Inside the Children’s Hospital, Katie Taylor sits down with Dr. Matt Goldstein—physician, biotech leader, and father—who shares the story of his daughter, Havi, and her diagnosis with Tay-Sachs disease. Despite both parents undergoing genetic screening before starting their family, a testing error led to a missed diagnosis. Javi appeared to develop typically at first, but over time, subtle changes led to a life-altering realization: she had a rare, fatal neurodegenerative condition. As a physician, Matt was trained to solve problems. As a parent, he was driven to...
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Why Hospital Continuity and Staff Support Are Critical: Parents Speak Out
Inside the Children's Hospital
Supporting Families in Pediatric Healthcare: Insights from Parent Caregivers In this episode, we explore the experiences of parent caregivers navigating their child's complex health journeys, emphasizing the importance of advocacy, sharing stories, and hospital-family collaboration. Join us as these incredible parents discuss how they advocate for their children, the role of social media in building community, and what hospital leadership can do to improve family-centered care.Key topics covered: Why parents start sharing their child's medical journey online and the impact of community...
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Trisomy 13: Challenging the Narrative and Choosing Hope
Inside the Children's Hospital
What happens when a diagnosis labeled “lethal” doesn’t tell the full story? In this episode of Inside the Children’s Hospital, Katie Taylor sits down with Nicole, a mom of five, who shares her daughter Charlotte’s journey with Trisomy 13—a diagnosis often associated with limited survival and quality of life. After receiving devastating news over the phone while at work, Nicole and her husband were told their daughter likely wouldn’t survive. But instead of accepting that narrative, they sought out information, second opinions, and a care team willing to partner with them. From...
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NICU, Trach and Home Care: One Family's Journey to Stability
Inside the Children's Hospital
What does it look like when life changes in an instant—and a family learns to navigate the unimaginable? In this episode of Inside the Children’s Hospital, Katie Taylor sits down with Marah, a mom of four, who shares her daughter Abigail’s journey after a cardiac arrest at just nine days old. What began as a healthy twin pregnancy quickly shifted into a complex medical path involving a NICU stay, life support, and long-term care needs. As Marah and her husband entered the world of medical parenting, they faced fear, uncertainty, and overwhelming decisions. Through it all, they leaned on...
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Meningitis in Children: When a Mother's Instinct Led to Life-Saving Answers
Inside the Children's Hospital
What happens when your child seems sick, but everything keeps coming back normal? For a lot of parents, the scariest part isn’t the diagnosis. It’s the not knowing. It’s being told everything looks fine when your gut is telling you something is off. This week, Katie sits down with Kayleigh, a medical assistant and mom of three, to share the story of her daughter Kanessa. Almost a year after a freak eye injury that seemed to heal, Kanessa suddenly got sick. At first, it looked like a simple virus. But within days, things escalated fast. Kaylee shares what it was like trying to make sense...
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When a Parent Has Cancer: What Kids Understand Before We Say It
Inside the Children's Hospital
What happens when your child already senses something life-changing—before anyone has found the words to say it out loud? When serious illness enters a family, children often understand more than we realize. And for caregivers, the challenge becomes not only navigating medical decisions, but also finding the right way to support their children through it all. This week, Katie sits down with Anna Lonon, founder of to share her family’s story of navigating cancer when her husband Michael was diagnosed with stage three head and neck cancer at just 29 years old. While raising a young son and...
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Spinal Muscular Atrophy (SMA): A Parent’s Journey from First Signs to Diagnosis
Inside the Children's Hospital
What happens when your instincts tell you something is wrong—but you’re dismissed again and again? For many parents, the journey to a diagnosis begins with a gut feeling—and the courage to persist in seeking answers. This week, Katie sits down with Nikki McIntosh, author and advocate, to share the story of her son Miles, who was diagnosed with spinal muscular atrophy (SMA) at just 18 months old. After noticing delays in his ability to stand and bear weight, Nikki followed her instincts despite initial dismissal—ultimately leading to a life-changing diagnosis. Nikki shares what those...
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HIE at Birth: A Dad’s Story of Brain Injury, NICU Trauma, and Finding Purpose
Inside the Children's Hospital
Within minutes of arriving at the hospital, Brady and his wife were told their newborn daughter had suffered a severe brain injury. In this episode of Inside the Children's Hospital, Katie sits down with Brady Crandall, founder of Youth Crews, to share his family’s journey following a diagnosis of hypoxic ischemic encephalopathy (HIE). What began as a routine pregnancy quickly turned into an emergency delivery, NICU stay, and a new reality as parents of a medically complex child. Brady opens up about: The shock and uncertainty of those early days Navigating life as a “medical dad.” The...
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Preparing Your Child for Surgery: A Pediatric ENT Surgeon’s Honest Advice
Inside the Children's Hospital
How do you prepare a child for surgery and build trust with their medical team? This episode explores how families and healthcare providers can work together to support children through procedures like tonsillectomy and other medical challenges. This week’s guest, Dr. Tali Lando, shares her perspective as a pediatric ENT surgeon, author, and mom of three teenage daughters. She and Katie discuss what it’s really like for families navigating medical care with complex kids and how parents can advocate effectively while still building strong partnerships with their child’s care team. If...
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Life After Pediatric Kidney Transplant: A Mom’s Journey Through Dialysis, Surgery, and Recovery
Inside the Children's Hospital
What does life really look like after a child receives a kidney transplant? Many people think transplant is the end of the journey—but for families, it’s often just the beginning. This week’s guest, Lyndsey Fedorko, returns to the podcast to share the next chapter of her son James’s medical journey—life after a kidney transplant. After years of dialysis, hospitalizations, and uncertainty, James received a life-saving kidney transplant from his aunt, marking the beginning of a new season for their family. Lyndsey and Katie reflect on the intense months surrounding transplant surgery,...
info_outline"Life is always in the mix of joy and grief, and those things coexist. But this is how I’m going to deal with it." - Joanne De Simone
In this episode of the Child Life On Call Podcast, Joanne De Simone shares her journey as a parent raising two sons with disabilities. From navigating her eldest son Benjamin’s rare brain malformation, lissencephaly and complex medical needs to supporting her younger son Sebastian, who is on the autism spectrum. Joanne discusses the challenges, victories, and personal growth she’s experienced. As a mother and special education teacher, and now an advocate for families of children with special needs, Joanne reflects on the importance of building community, embracing support, and living fully in the moment. Her story offers hope and practical wisdom for parents and professionals alike.
Key Insights:
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The Power of Community: Joanne emphasizes the importance of connecting with other families who share similar experiences, as they provide invaluable emotional and practical support.
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Advocating for Your Child: Joanne shares her approach to advocating for her sons, including the importance of interviewing healthcare providers to ensure they see her children as whole individuals.
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Living in the Moment: Joanne describes how her background in modern dance taught her to “live in the movement,” helping her find balance and perspective amid constant challenges.
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Adapting Over Time: Joanne reflects on how the challenges of parenting evolve as children grow, from educational decisions to navigating adult systems of care.
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Strength in Vulnerability: Through writing and advocacy, Joanne has found a way to process her experiences and turn them into a source of strength for others.
A HUGE thank you to our sponsors:
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Resources and Tips Shared:
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Joanne’s Blog and Book: Visit Joanne’s blog at special-educationmom.com to learn more about her book, Fallen Recovery, and read more through her blog posts.
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Support Groups for Rare Conditions: Joanne highlights the value of connecting with email support groups and online communities for rare conditions. Search for condition-specific groups on platforms like Facebook or Yahoo Groups.
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Begin Health Prebiotics: The gut health of children is important. Visit BeginHealth.com and use code ChildLifeOnCall for 25% off products.
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SupportSpot: Download the SupportSpot app at childlifeoncall.com/supportspot for resources tailored to families navigating pediatric care.
Tune in for an episode filled with vulnerability, wisdom, and a reminder of the strength found in community and resilience.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Learn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.